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Lyme Awareness Month-we need your help


adkmom

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I would be happy to help. We are not in a top ten state, but we are in a top state by CDC numbers for Rocky Mountain Spotted Fever. Also, we are a top state for Autism Spectrum Disorder, which my son was misdiagnosed with at age 6. Could other children be misdiagnosed as well?????

 

Hi,

 

Did your child get a positive for Rocky Mountain fever? Positive for Lyme? What region of Missouri are you in? Whose your treating doc?

 

thanks for your support!

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I'm torn about this because we also have a dx of PANDAS, but I would love to help if I can.

Same thing here... we also have a PANDAS diagnosis for ds, and for dd we have no positive labs, just going on symptoms, so I don't know how helpful it would be (I'm thinking our story will probably sound more like a crazy mother making up stuff!!! LOL!!!)

Now, seriously, I'd be happy to share, at least ds's part, since after over a year of treating PANDAS and before moving to plasmapheresis, we finally got 4 bands positive through LABCORP, and we decided to jump ship and pursue Lyme/Co-infection treatment.

Let me know if you have any guidelines to follow, and I'll try to start writing something...

 

Thanks! What town & state are you in?

We are in Warrenton, Fauquier County, Virginia. Lots of people with Lyme around here, although most docs are still in denial!

Also lots of PANDAS in our small little town (I know of at least 7 confirmed PANDAS cases just within the homeschool community!)

It's unbelievable. Strep is always around, I am convinced it's because Lyme is so prevalent and under-diagnosed. Don't get me started!!!

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Thanks to everyone who has responded. If you haven't already, can you please forward to my personal email: darlenemcmahon@frontiernet.net the following?

 

what state you live in, your first name, your child's first name and a 2-3 paragraph description of your situation/story. (the presenting symptoms, how you ended up at the doc/testing and how things are going now) I'm sure I'll be back in touch with some questions, but it's a start and I'll tweak what you write and plop it into the press release.

 

(Everyone - I'll forward the release with your story before sending it out. So, you can approve of everything.)

 

thanks again. and sorry for any confusion!!

 

darlene

 

PS - We're still looking for stories from DE, Maryland, New Jersey, Rhode Island.

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I would be happy to help. We are not in a top ten state, but we are in a top state by CDC numbers for Rocky Mountain Spotted Fever. Also, we are a top state for Autism Spectrum Disorder, which my son was misdiagnosed with at age 6. Could other children be misdiagnosed as well?????

 

Hi,

 

Did your child get a positive for Rocky Mountain fever? Positive for Lyme? What region of Missouri are you in? Whose your treating doc?

 

thanks for your support!

DS got a positive from Quest for RMSF. We also got positives for Babesia, Lyme, and Bartonella. He never had the rash until treatment on antibiotics brought it out. We are in the NW side of Missouri, close to Kansas City and our doc is Carol Ann Reyser of Lee's Summit, MO.

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Glad you bumped. I am willing to help if you want our story. We live in Ohio (Akron/Cleveland area) as far as I know we are not a top Lyme state but I think that is even more reason to get the story out - as people here may not even think of it as a possibility. Although I know a kid in our community that got the EM rash this summer after attending the local boy scout camp and was treated fairly quickly - I hope it was enough!

 

Aidan (8 years old) was IGG positive by IGenex criteria (bands 41 and 83-93)so I guess that is my hesitation that it was negative by CDC criteria. If his IND counted he would have been IGM positive by either criteria. We are thinking congenital Lyme as we had multiple symptoms since at least 1 year old and in hindsight since he was born but I have not been tested or treated yet. But I have lived in several states and travel a lot so who knows where we picked it up.

 

I also would be more confident to get our story out if we were further into treatment and to see if we had success. As someone said in a previous post I am a little concerned that I would appear to be a crazy Mom but I may be willing ot risk it. Just not sure if the time it right.

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Mati'sMom - your box is full.

 

Hi Matismom,

 

Just wondering if your son presented with Lyme with neuropsych/behavioral symptoms? How long has he had it do you believe? And is he seeing an LLMD in VA? How is the treatment going?

 

Whenever you're free, can you respond to darlenemcmahon@frontiernet.net ??

 

Thanks and glad you seem to be on the right path now!

 

darlene

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